University of Edinburgh
People with a diagnosis of dementia experience many changes to their social networks - and the dynamics of these changes and their effects were explored in a participatory secondary data analysis project funded by the Economic and Social Research Council held by Professor Charlotte Clarke and Heather Wilkinson (University of Edinburgh, UK) and in partnership with the Mental Health Foundation and Alzheimer Scotland (ES/L01470X/1 - Inciting dialogue and disruption –developing participatory analysis of the experience of living with dementia and dementia care). More information about the research is available at Talking Dementia.
The research re-analysed a qualitative dataset of 156 interviews with people diagnosed with dementia and their family carers which had been collected as part of the Department of Health funded study into peer support and dementia advisor roles within the National Dementia Strategy for England (see Clarke et al 2013, 2014, 2016; Keyes et al 2014). We worked with a further 35 people living with dementia to co-analyse the data, using the format of a series of four workshops with each of four groups to achieve this. An analytical framework was based on:
- The cultural theory of risk (seeking to understand how the social organisation of communities influence the ways in which members of that community perceive and respond to risk), using Douglas’ classic group-grid analysis (Douglas & Wildavsky 1982). The ‘grid’ refers to regulation and the extent to which members of that community are expected to adopt the rules for personal and professional conduct that the community espouse. The ‘group’ refers to cohesiveness and is the extent to which individuals within a given community are bounded together and see themselves as a coherent community.
- An ethic of care framework, based on definitions of the five elements developed specifically for the application of an ethic of care to dementia care settings by Brannelly (2006). Our analysis began by taking the instances identified through the group-grid analysis of the data set and identifying where each of the five elements of the framework occur (attentiveness, responsibility, competence, responsiveness and trust). We then explored and mapped links between the occurrences of the five elements identified, thus tracing examples in the data set of interpersonal interaction that promote an ethic of care framework.
- Dementia and the effect it has on adhering to presumed but unspoken social expectations can lead to a gradual process of withdrawal of friends and withdrawing of oneself which culminates in social exclusion.
- Peer support, which is underpinned by a different set of social expectations, can restore a sense of social inclusion and is beneficial for some people, but not everyone.
- More attention to the collective nature of care which includes peer support, families, communities and professionals, with people with dementia recognised as playing an active role within this network, could better support social inclusion.
- New social expectations based on co-operative listening, co-operative action, and co-operative caring could lead to solidarity with people with dementia and a society where people with dementia can be included in community, social and public life.
In this research process, the analysis moved between individual voices and composite pleural voices – firstly, having heard the ‘individual’ narratives of people living with dementia in the 156 interviews of the original dataset, and secondly worked with a further 35 people living with dementia during the secondary data analysis, the research process thirdly joins the identified research themes together in the development of a created and performed single narrative (Michael’s Map) – leaving the final voice of interpretation with yourself as audience rather than in the academic telling.
The film Michael's Map has been produced in a partnership between the University of Edinburgh and Skimstone Arts and is freely available at on Vimeo.
We would very much appreciate hearing about how you use the film and to what effect – so please do email me.
Brannelly, T. (2006) Negotiating ethics in dementia care. An analysis of an ethic of care in practice. Dementia 5:2;197-212.
Clarke, C.L., Keyes, S.E., Wilkinson, H., Alexjuk, J., Wilcockson, J., Robinson, L., Reynolds, J., McClelland, S., Hodgson, P., Corner, L. and Cattan, M. (2013) HEALTHBRIDGE: The NationalEvaluation of Peer Support Networks and Dementia Advisers in implementation ofthe National Dementia Strategy for England. Published by the Department of Health and accessed 11/10/13
Clarke, C.L., Keyes, S.E., Wilkinson, H., Alexjuk, J., Wilcockson, J., Robinson, L., Corner, L. & Cattan, M. (2014) Organisational Space for Partnership and Sustainability: Lessons from the Implementation of the National Dementia Strategy for England. Health & Social Care in the Community. Published online: 22 SEP 2014 | DOI: 10.1111/hsc.12134
Clarke, C.L., Keyes, S.E., Wilkinson, H., Alexjuk, J., Wilcockson, J., Robinson, L., Reynolds J., McClelland S., Hodgson P., Corner, L. & Cattan, M. (2016) ‘I just want to get on with my life’ – A mixed methods study of active management of quality of life in living with dementia. Ageing & Society. DOI: https://doi.org/10.1017/S0144686X16001069
Douglas, M. & Wildavsky, A. (1982) Risk and Culture. University of California Press, Berkeley, CA.
Keyes S.E., Clarke C.L., Wilkinson H. et al. (2014) ‘We’re all thrown in the same boat…’ A qualitative analysis of peer support in dementia care. Dementia Published online 17/4/14 DOI: 10.1177/1471301214529575